Saturday, September 15, 2012


Communication is a funny thing. We know as humans that it is vital to existence and can mean the difference between loving and hating. But what happens when you want to communicate well, and as far as you know, you are, but no one else around you can understand? I am not referring to understanding what living with lyme is like, I mean like cannot understand your sentences or vocabulary. It can be like you are speaking an entirely different language. 

Lymies often have problems with attention spans. This leads to frequent interruptions with something completely unrelated.  I assure you, it not meant as a slight or to be rude, we just honestly forget that there is an existing conversation.  Even now, I cannot remember a good example of me changing the topic so rapidly. This drives people away. We know it does. We don’t mean to do it. The problem for me specifically is that I am an extravert and I love being part of group conversations- a very hard task when you cant remember what is being said. I don’t want to disappear into the corner of the room because I am not participating. So what is one to do?

Try our best to actually carry on the conversation. 

Explain to people that we might seem as though we are choosing to be rude and dismissive, but in reality, we are just super  excited to be part of the conversation in the first place.

And if they don’t understand or believe it is not our fault, if we have explained. But we need to make sure we are clear in our explanations, with brings me to my second point. 

Often we say things that make sense in our brain, and even to our Lymie friends, but not to a brain void of the bugs. I wrote this to a close Lymie friend the other day on FB,
   “There is a quality to our friendship that i totally love and cherish and that is our simultaneous add and ocd and phonetic spelling. i cannot communicate like this wih anyone else without them getting mad an thinking i dont listen”

Our conversations are filled with constant subject changes and often unanswered statements. It doesn’t matter. If it is really important, we know it will be repeated. There is a certain relaxation when I interact with her. I know I can let my brain do its thing and know that she won’t get mad (unless one of us is already mad from Lyme rage, but that’s not on us and we get that). There is no embarrassment for two smart women who cant find a simple word or worry about judgment for not being able to get up and shower or eat or anything. What we have instead is love, help, understanding, and advice. For instance, I couldn’t hold my head up the other day and we were chatting on fb. (I was on my phone as I couldn’t hold my laptop either.) She easily helped me figure out that Samn had actually left food near my bed for this reason. I was able to drag myself to the nightstand (yeah, I know it’s right next to the bed, but that foot feel like a mile sometimes) and eat some dry cereal. That got me able to sit up and get in my chair. After an hour, I finally made it to the kitchen. Like I said, we get it. We get each other. Sometimes we have to help each other figure out how to talk to others. 

Explaining to someone everything that this disease entails is crazy. The list is as long as you’ve had the stupid bugs. We have to do our best to stay focused (hard to do, see how unfocused this entry is and I am having a pretty good neuro day.) Maybe make a list. Or tell your friends that when something happens like repetitive interrupting, call you on it, but not harshly. They don’t want you to shut down or fly into rage. I think the best way might be for them to say, “Hey, are you feeling ok? You seem to be having a hard time staying on topic and remembering that people are talking.”  If it is seen as a symptom, which it is, and we know that our friends get that, it will be much easier to change our behavior. I don’t promise that they won’t have to say the same thing 5 or 10 minutes later, but it should help keep tempers down. 

Our symptoms can cause some very annoying behaviors. We often don’t know- we can’t see it. It changes my speech patterns and even my voice. I know English grammar. There are moments all I can pull out of my head is a noun and maybe a preposition. They might not even be related. Forget about subject verb agreement. Trust me, it is way difficult for us when we know that our knowledge is locked away in our heads and we are denied access. No wonder anger is so common. Add the lack of understanding from others, and you get one very upset and lonely person who only wanted human interaction. Please be patient with yourself and others as you learn to navigate and improve your life whether the Lyme is in you or in someone you love. 

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